Post-SSRI Sexual Dysfunction: Getting a Diagnosis

When reading about the experiences of people with Post-SSRI Sexual Dysfunction (PSSD), one of the common themes is the difficulty that some sufferers have faced in trying to obtain a formal diagnosis. However, this isn’t always the case. There seems to be a disparity between the experiences of different PSSD sufferers when engaging with the healthcare profession. The same holds true for Persistent Genital Arousal Disorder (PGAD), Post-Retinoid Sexual Dysfunction (PRSD), and Post-Finasteride Syndrome (PFS). The question is – why?

Some people describe seeing numerous doctors, all of whom denied any knowledge of the condition and refused to believe that ongoing sexual dysfunction could be caused by an antidepressant, by isotretinoin, or by finasteride.

But others have found it relatively straightforward to have their dysfunction attributed to the previous use of a medication. Obtaining a diagnosis involved little more than seeing doctors in their local area through normal channels. In fact, some patients have been surprised at how many doctors do know about it.

This disparity is reflected in official sources.

PSSD has been documented in the medical literature for over 11 years. But the papers have largely been in highly specialized journals such as the Journal of Sexual Medicine or in less well known journals rather than in BMJ. Mind, one of the UK’s biggest mental health charities has warned about the problem in their literature since 2008. The US Prozac leaflet has contained information about persisting sexual side effects since 2011 – although surprisingly not about duloxetine. Two review articles were published in 2017 – the first by Reisman and the second by Bala et al.

Alongside all of this, there is an increasingly impressive body of literature on Post-Finasteride Syndrome as well as FDA warnings about finasteride products which have added to the evidence that medications can cause persistent sexual dysfunctions. PRSD has been less well served.

DSM-5

The Diagnostic and Statistical Manual of Mental Disorders is published by the American Psychiatric Association. It gives a compendium of current psychiatric diagnoses and treatment in the United States.

The latest edition (DSM-5) published in 2013 contains a section on substance/medication-induced sexual dysfunction. Page 449 states –

“In some cases, serotonin reuptake inhibitor-induced sexual dysfunction may persist after the agent is discontinued.”

You can see a copy here. Try printing it out and taking it to your doctor. We’d be interested to hear how they responded.

Who is listening?

When it comes to finding a health professional who is willing to listen, it’s fair to say there’s probably an element of luck involved. It may also depend on the specifics of your case such as your medical history, the onset of your condition, and any other symptoms that you might have. For example, a PSSD sufferer with ongoing depressive or anxiety issues is perhaps more likely to have their sexual dysfunction attributed to a nervous disorder, compared to a patient who has no mental health issues.

It may also depend on the type of doctor you see. Some people seek out psychiatrists in the hope that they will have the best understanding of what has gone wrong. But psychiatrists are no better when it comes to antidepressants than dermatologists are when it comes to isotretinoin. Primary care doctors are often better. However, it has been the experience of some sufferers that urologists have often been more familiar with the condition. They haven’t always heard the term “PSSD”, but they’ve sometimes seen and diagnosed patients in their clinics who have been left with persistent sexual dysfunction after using antidepressants. But urologists sometimes have problems believing finasteride could cause this problem.

In some ways, it may be easier for a patient to get recognition of PSSD rather than withdrawal, and this has certainly been the experience of some sufferers. It may be partly due to the medical literature, but also because PSSD can be more easily disentangled from any problems that may have led to treatment in the first place. Sufferers typically have completely normal sexual functioning prior to taking the medication, whereas severe withdrawal can contain strong depressive and anxiety symptoms which are more easily mistaken for an underlying illness.

Practical steps

There are a few practical steps that may improve your chances of being listened to.

If you are being referred to a specialist, you could try sending a letter first. Ask if they are familiar with the condition and whether they have come across it in their clinic. If they answer unfavorably, this might save you a wasted trip and avoid having something negative added to your medical records. It could also save you money if you are paying for the consultation.

Another option is to write to urologists in your area to ask if they have any knowledge or experience of the problem before arranging any appointments. Hospitals often have websites with information about their medical staff, which may include special interests. Look for those who deal with sexual matters. Men might want to look for the term “andrology” which refers to men’s health and would generally include sexual problems.

For women it may still be worth writing to those who have an interest in andrology. At the moment, we don’t know how receptive gynecologists are to the issue. While PSSD affects both sexes, men seem to more commonly report the problem and may be more likely to seek medical assistance. It’s therefore possible that those who deal with male dysfunction may be more likely to have seen the condition than those who deal exclusively with women’s health, though it’s difficult to know for certain. Women, in contrast, seem more likely than men to present with PGAD.

Psychosexual therapists may be worth contacting. Some of them have seen people with these conditions and may acknowledge your problem is pharmacological and not psychological. The first recognition of these issues came with the description of PGAD by a therapist.

During any consultations, it’s important to be concise. Appointments are often very short and if not to the point, you may lose out. Prepare what you want to say beforehand to make sure you cover all of the important points.

If you are experiencing genital anesthesia and pleasureless/muted orgasms, these are important features to mention as they don’t occur as part of depression or anxiety. If you’re a man and have a loss of nocturnal erections, this is also useful to mention as it indicates the likelihood of a physical problem rather than a psychological one.

Trying to make your case by talking about big pharma, internet forums, Facebook groups or people that you’ve met online, is unlikely to be helpful. Doctors are more likely to be receptive to hearing about the medical literature. Rather than just telling them about it, you could try printing it out. They won’t have time to look at it all during your consultation, but you could leave it with them to look at later if they seem interested.

If everything fails, don’t forget that it isn’t just your doctor who can decide if you are experiencing an adverse drug effect. You can make this decision for yourself by reporting it to your country’s drug regulator. In some cases, the drug regulator can send a copy directly to your doctor if you provide their details when reporting. If this isn’t possible, you could print out a copy and either hand it to your doctor, or mail it and ask for it to be placed on your medical file.

We would be interested to hear if you find any of these points useful or if you have any others. If we can understand why people are having such different experiences when dealing with health professionals and why some are more successful in obtaining a diagnosis, we may be able to figure out the best way to engage and interact with the system when reporting not only PSSD, but other problems as well.

Comments

As you point out there are some who have had a positive experience with health professionals – but too many don’t….could there be a list of those doctors who are supportive and especially who have filled out the report ,so others may request a referral? They would ideally of course be willing to share their names openly but if not privately with Rxisk? Bearing in mind the word would get around subsequently they might have reservations but surely they would have a right to make a clinical judgement? Otherwise people are likely to be wasting even more time often amounting to years chasing around for help -becoming more depressed. By which time a diagnosis will be even more muddled by an over riding diagnosis of depression and neglect the issue of adverse drug effects.
Notice there is no real interest from Italy – have e mailed a few random psychiatrists and mental health units .It’s a shame as Italy used to be in the forefront of empowering clients but I can’t find any small size independent ‘user groups’ .

Dear Susanne — Funny you should mention it … I was looking through the medical literature a couple of days ago, and lo and behold there were two papers by a research group in Italy! The lead author is at the University of Udine: Sabina Cauci, Ph.D., sabina.cauci@uniudine.it
The others are various places in Udine and Trieste.

They are trying to work out the genetic differences that might make certain people more vulnerable to PSSD when they take Finasteride. So far the answer seems to be that it’s complicated. They have some challenges separating out the genetic variants for baldness itself from the genetic variants for trouble on Finasteride.

Even if their quest succeeds, I don’t know how relevant it’ll prove to be for people who already have a PSSD-type syndrome. But at least they recognize that the problem exists and is not psychological! Might be interesting to drop them a note.

I do think we’ll probably have more success with doctors in other areas of medicine, than with psychiatrists. The shrinks, alas, are the true believers–they are getting pretty close to faith-based medicine.

Serendipidy Johanna.. thanks v much…I am VERY cynical about the psych profession too but as we know there are some decent ones who may rxisk bucking the hierachies.so will drop them a note as you suggest and thanks for putting the links which help a lot – (must find out how to do that..) re faith based psychiatry -came across a ref to one who was described as ‘the high priestess of psychiatry’! Beliefs are so hard to budge especially when the high priests/esses are in charge

The sparking of the ‘Italian Connection’ .. Susanne and Johanna .. could it be ‘bellissimo’ ..

“This kind of study is not cheap: it needs, at least, 50000 € for a basic investigation (the exact cost can be determined only after the elaboration of the study). Most of them (40000 €) will be donated by Coraggio (please everyone be eternally grateful to this man), another part will be funded by the university of Milan.”

The research team plan to start the study in november 2017 and publish the results in first months of 2019.

“A very important researcher from the University of Milan, that does research in the field of Neuroendocrinology and has conducted some studies on Post Finasteride Syndrome, is going to start the first study on mice in order to understaind what kind of brain alterations are causing PSSD. Doing this study is of paramount importance for some reasons:

-Undestaind the etiology (ie what cause) of PSSD will allows to locate the target for a cure

-Showing that there is some kind of persistent damage induced by SSRI\SNRIs in our brain is the culprit to persuade everyone that we are not a group of paranoid and depressed people.

-A methodical and well done study, conducted by an important research team from an important university, will bring the interest of other researchers and the scientific world on this issue, that will no longer be ignored. This will lead (hopefully) to the start of new studies.”

SOMERSET, N.J., Dec. 9, 2014 – The Post-Finasteride Syndrome Foundation today announced the funding of a third clinical study on post-finasteride syndrome (PFS), this one a collaboration between the University of Milano-Bicocca and the University of Milano, both in Italy.

I cant wait for the day PSSD is officially acknowledged. I have had 10 years of being told it doesn’t exist by doctors. It will be such a relief when i am at least believed. It will make living with the condition a bit easier and i wont feel as isolated.

We must not stop until this horror gets fully acknowledged and accepted by medicine. It would be great if eventually the majority of doctors and pharmacists will have heard about it.

I feel we are definitely moving in the right direction RE getting the word out there about PSSD.

Getting acknowledgement from a doctor about PSSD is like trying to draw blood from a stone. I have had PSSD since 2008, and not a single healthcare worker I have seen has heard of it, and they insist on it being a symptom of depression. I remember one time prior to an appointment, I emailed a private consultant psychiatrist in Harley Street explaining to him in detail about PSSD and the condition, mentioned Dr Healy and provided him links to PSSD articles on the Rxisk website. When I came to see him, he said that my sexual dysfunction is a symptom of depression. I didn’t even answer back. My impression was that he didn’t bother reading any of the articles. To feel frustrated and angry is an understatement.

Is there any update regarding the RXISK prize? Do you think there will be a cure soon? Im in my mid 20s and suffering from no libido whatsever since suddenly quitting all meds at age 22. I maybe had mild arousal a handful of times at most, but nothing much at all. Im so sick of this. Is it forever? I hope not. Is it a brain thing or a body thing? I need some hope because its all doom and gloom online regarding pssd (save the few positive recovety stories, which I am grateful for). Does it get better in time? So fed up

We will find an answer. We need you and everyone else to spread the word outside the online forums – to people who have never heard of the condition. Hopefully in the new year we will have some proposals about how best to move forward.

David, you very confidently say that ‘we will find an answer’ to these problems, does that mean that you have seen progress towards the answer since September, when the RxISK Prize was introduced? The donations are increasing week by week in quite a remarkable way – but, however we look at it, there is a way to go yet. Do you feel that there is work already going on which has accelerated now there is a prize in view – would we be informed when a suggestion is in trial by ‘the adjudicators’? I just feel that the more info we have at our fingertips, as we try to persuade an interest in the problem and the need for donations, the more successful we are likely to be.
To have raised over 33 000 dollars in under 3 months is amazing – I feel we have to take our efforts to the next level if we are to match this in the next three months. We know that we can do it – not so much for ourselves but for those who are waiting ( if I were in their shoes, it would be waiting rather impatiently!) for this breakthrough. Does the RxISK team have any ideas of how we could increase the interest of the lucky ones who, as yet, are doing just fine on these drugs, so that they become interested in the campaign? The number of prescriptions is increasing, we are told, so there must be a sea of possible donators out there if only we could get them to believe the truth of the horrific stories linked to the very prescriptions that they so willingly praise – and of which they will allow no criticism at present.

Am pretty confident. Its the descriptions of people who have the problem that points to a way forward plus getting pointers from people doing their own research. The upshot is we have made contact with several research groups in N America and Europe. Nothing is moving quite as quickly as I would like but the bits of the jigsaw make a reassuring fit at the moment.

This is good.
Am still wondering if ANYONE has found a way of getting acceptance from the ‘I’m alright Jack’ brigade of AD users for this campaign? Or is it just a Welsh thing that you get a mouthful for daring to suggest that ADs are anything except fantastic? I haven’t even been able to have a decent discussion in order to understand exactly where they are coming from – it’s just a curt ‘I don’t listen to anything anti-medication’ usually, which immediately ends the conversation. However, as has been said, just the fact that we share as much as we are able gets the message out further I suppose – and, who knows, maybe our greatest critic goes home and searches online to see what all the fuss is about. Many a success may well come out of an apparent refusal to engage I guess.

In line with Mary’s idea for sharing cards, I created business sized cards that have the Rxisk logo and website on the back, and the Rxisk footer on the front with the words:

HOPE FOR A CURE Can you help?

We need your support to find a cure for one of the most debilitating side effects of modern medical treatments — the persistent loss of sexual functioning after stopping antidepressants, finasteride (Propecia) or isotretinoin (Accutane).
For more information see RxISK.org

Since I don’t have office equipment (or the skills) I made them online and picked them up at the store the next day and paid 20 bucks for 500. Every day I find places in the community to put them, bulletin boards, hospital waiting areas, shop windows where they allow things to be posted. I just leave a couple laying around here and there. It’s short and sweet, should spark interest, and may help connect other PSSD sufferers with RxISK.

Along the lines of the candlelight vigil we had earlier this month, I’m also drafting a letter to send to churches. I’m still working on the framing to encourage parishes to make this a cause of their own, but even if they don’t get involved in the way we would like, they are still hearing about the problem.

It feels kind of empowering to do this. The problem is already out there, likely everywhere. We just need to connect people with information and see what happens. I’d be happy to share what I have with anyone here.

This is fabulous. Its great to hear from everyone who makes contact but everything feels like it pays off when some people do the kinds of things behind the scenes that you are doing. One of those behind the scenes here has recently emailed over a hundred urologists to see if we can raise interest there. Another emailed all 500 therapists linked to COSRT – the main sex and relationship therapist organization. The response from all these people can be pretty minimal but at some point we’ll reach a tipping point in terms of general awareness

Great work Laurie! Do you find permission easily granted for you to leave your cards in various places? It is difficult, here, to be allowed to leave cards etc. in public places unless you are doing so as part of a registered charity. The result of this, of course, is that I’m only able to share with people I know – but some of them take a few cards and share those slightly further afield which helps I suppose. Am intending to put a Rxisk info. card and a Prize one in with everybody’s Christmas card this year – at least the message will be delivered, even if not at the best time for the chance of donations.

Mary, it just depends. There are plenty of public bulletin boards and businesses that have a spot for cards. In the hospitals I just plant a couple in waiting areas with the magazines. Even if housekeeping picks them up, I figure at least somebody is seeing them. I like your Christmas idea.

Thank you for a much-needed dose of positivity Laurie – of course you’re right that even if your cards don’t go directly to the ones we’d like to catch, at least SOMEONE will have seen them and who knows where that may lead.
I’ve been thinking hard today about ways to change the attitude of AD users in general. I haven’t had a breakthrough unfortunately, but have decided that, as well as the cards in with Christmas cards I’m also going to include your message ‘Hope for a cure’ etc. in there with a request to share with all Facebook followers, put on Twitter or, if not using social media, to make 5 copies and hand out to family, friends or neighbours. That should spread things well away from our immediate area and give me the satisfaction of doing a little bit more for the cause!

Hi Mary – Like you say you never know when the message might hit home or ring a bell when they need the information. Nobody thinks it could happen to them. I used to do the same as Laurie and put them all over the place, waiting rooms, community centres, cafes, even on buses and trains, without permission. I wouldn’t have the strength to keep trying to engage with people as negative as those you come across so leaflets avoid that depressing experience. I bet some of them have tucked your message away. Good luck with the christmas messages.

I think I shall start to accidentally drop a few cards here and there – and just hope that the dreaded Enforcers are not around at the time! I’m also thinking that, when speaking face to face, I’m going to start with the ‘medically unexplained symptoms’ diagnosis which may be more acceptable since no mention of mental health – but will eventually lead to RxISK for answers anyway!
Have just chatted with someone on Twitter who sounds pretty desperate and made two suggestions – one being looking up RxISK.org and its forum. I hope he appears on here soon.

Since coming off benzodiazepines in May 2015, i have been slowly rebuilding my life.

Every area of my life has slowly but surely been improving, and i have made a lot of progress in a lot of different areas in my life.

Everything has improved apart from PSSD.

Despite eating well, exercising regularly, and generally living as well as i can, i have only seen very small improvements in my PSSD.

It is the only thing that just refuses to budge. I had some benzodiazepine withdrawal symptoms that took 18 months to completely go after jumping off diazepam in 2015 after doing a long taper over about 4 years. All of those withdrawal symptoms from the benzodiazepines have gone now.

Everything has improved apart from PSSD, and PSSD was my most distressing symptom out of any withdrawal symptoms/ side effects i have had from any of the psychiatric drugs. It just wont go.

It is a genuine bane on my existence. If it wasn’t for the PSSD, i feel i could be living a good and happy life in the next few years, from all the progress i have made in other areas of my life. But with no sexual feelings and numb genitals, i cannot feel happy.

People say there is more to life than sex, and there is truth to this, but without any sexual feelings, especially as a young man, i just cant feel happy. I have tried, and i cant.

I could have 10 million pounds in the bank, and everything else going well in my life, but without being able to enjoy sex in any way, shape, or form, i might as well have nothing.

In some ways i would trade all the money in the world just to have my sex drive back, and to be like i was before i ever took citalopram. I really mean it when i say this!

I feel so hollow, and empty inside without my sexuality, and nothing in the world can compensate for this.

Spruce, it’s only been 2 years and you’re seeing small improvements, which is a good sign.
I’ve read recovery stories in which people have overcome pssd after 7 years, sometimes more.
Nothing is impossible. There is hope.

The human body and mind are so much stronger than some shitty meds. We will all overcome this, no matter how long we have had it.
Thank you Dr Healy.

Mary, I did encounter a dreaded Enforcer, lol…he spied me as I dropped one on a table at the hospital and he walked straight for it as I was leaving. So now he’s got the information and it’s up to him what he will do with it. But it’s in his mind. Nothing wasted.

Oh Laurie – I’m picturing you scuttling away when you spotted the Enforcer! Seems that yours are not quite as full of their ‘Jobsworth’ as ours are. Here, they slap you with an on the spot fine as well as confiscate your wares!
Your cards are fabulous – well worth having them professionally done I’d say. Am going to look into that over here – but I’ll need to have a Welsh version added too of course. Have enough negative responses without having the Language Brigade after me too! Keep meaning to get a car sticker version done. Must DO rather than just SAY I guess – when time allows.

I just did an interview with Elaine Riddick, surgical sterilization victim of the North Carolina Eugenics program that took place in the USA. We talk about my Marathon campaign to support the rxisk prize called Run Against Castration as well as PSSD and her experiences and campaigning. Including her experience of being pushed and taking mental health drugs.

I understand what you are saying Lauren, but i have been off SSRI’s for over 8 years now, and i am pretty sure it was the SSRI’s not the benzos that have caused most of the sexual problems; especially the numb genitals.

I continue to hope that one day the PSSD will resolve, but somedays it all feels hopeless.

I am new to the realm of suffering with PSSD, a year after stopping a medication I only took for a few weeks. This all started a year ago and onset in Feb 17. I read that alot of people are disbelieved when presenting this problem to medical practitioners and my experience has been the same. This is very VERY frustrating and aggravating for me and, I am positive, others in the same boat. I know now from having suffered for a year (which in comparison, from what I’ve read, is a short time) but in that time I have experienced the cloud it casts over my life and may very well do for the rest of it. I have never experienced a feeling of depression and destitute more than I do now (ironically the worst depression I’ve ever experienced before the medication. It’s not a relapse, it is a natural reaction to the doom I experience understanding the gravity of my situation in having PSSD. Celibacy can only increase my negative feelings and emotions to an aggravation I’ve never experienced before in life. This ADDS to my feelings of isolation and disclusion…HOW IS THIS THERAPEUTIC???) Needless to say I am extremely angry, sad, and it all gets aggravated even more so when I deal with people who don’t understand or who don’t believe in this condition. I am suffering a great deal and my relationships have suffered a great deal as well. People think I’m odd and eccentric and the whole thing distorts my ability to have good relationships with others (needless to say I become quite resentful and offended when I find myself invalidated by others in the face of this problem). Other people think I am just flat out lying to besmirch the better names of others, or to cover up for a hang up I may have and may otherwise have no other way of explaining it or even the courage to. I see a forum here where others are talking, and I want to let you all know that I am here too and that I want to be heard and understood by others. I hear everyone’s problem and can relate. This is a hard thing to deal with alone and I do so quite often. My email is dyztopianbull@gmail.com and I am looking for answers, understanding, people to relate to, any kind of information or any kind of direction to some kind of help and understanding. If anyone can help me it would really be appreciated. Thank you to all who post here, care, share, understand and help others because people with this and other conditions frankly are never heard properly if not at all.